The death or impending death of a child in the
pediatric intensive care unit (PICU) affects the dying child, family
members, other children and families in PICU as well as the team
members. Bereavement support is particularly difficult if the death is
sudden and unexpected. During these moments, the PICU team becomes the
primary column of support for the family and therefore has significant
responsibility and influence over the course of the bereavement
process(1). Surveys reveal that only about 6% of doctors working in PICU
situations have any training in dealing with a grieving populace. The
role of the team following the death of a child in PICU has not been
well defined(2). Not surprisingly, the PICU staff often feels
overwhelmed in situations of bereavement. An awareness of the sources of
stress in grief and a practical approach towards the management is
easily acquired with some deliberation and a little practice. We in this
article offer helpful suggestions for improving the bereavement support
in PICU.

Sources of stress in PICU during bereavement

Sources of stress in PICU have been illustrated in
Table 1. Some of the stressors are avoidable. Others need to be
acknowledged and coping strategies enhanced based on the developmental
age and comprehension of events.

Table I

Sources of Stress in PICU During Bereavement.

The dying child in PICU

Strange and intimidating PICU environment; separation from
familiar caregivers; loss of self control and accustomed routines;
inadequate use of analgesia and sedation; lack of play; witnessing
the death of fellow patients.

Parents of children in PICU

Loss of parenting role; perceived inefficiency
of the PICU team; insecurity of changing family dynamics; blame on
the parent for child’s condition; limited access to their child;
mismanaged bad experiences in the past; uncertainty over outcome;
perceived poor social support; inadequate/ conflicting reports on
the child’s status from team; economic considerations limit
treatment options; restricted opportunities for communication with
treating team; parents with restricted ability unable to express
their emotions; waiting under difficult circumstances;
intimidating high-technology environs; sick appearance, behavior
and similarities between their child and others with fatal
outcome; exposure to grieving relatives or news of other deceased
children.

PICU team members

Exhausting physical demands of caring for sick
children; conflicts between the team members and the child’s
family; moral dilemmas due to available technological resources to
prolong life; making uncomfortable requests like obtaining consent
for a postmortem; breaking bad news to the family; family is
perceived as difficult; conflicts within the team; anger at
perceived inadequacies.

Needs of the dying child

Maximize physical comfort

Children experience and form vivid memories of their
pain like adults. Their inability to articulate their discomfort and our
inability to assess pain in critically ill children leads to inadequate
control of pain symptoms. Effective sedation and analgesia needs to be
achieved through safe and proven medication regimens(3). Issues in the
management of discomfort are presented in Table II.

Table II

Difficulties in Identifying Pain, Discomfort and Advantages of Good
Pain Control.

5. Difficulties in assessing pain in critically
ill, unconscious children

Discuss the child’s impending death

Children with deductive reasoning (about nine years)
are able to perceive their own impending death and if allowed, will
express their feelings verbally or through develop-mentally appropriate
mediums (e.g., drawing, play). Staff and family often erroneously
believe that the children need to be protected from the knowledge of
their death(4). This leads to the isolation of the child and an
increased distress associated with bereave-ment(5). It thus seems wise
to encourage the terminally ill child to discuss issues related to one’s
death.

Encourage involvement in the end of-life decision-making process

Children are rarely informed that they are dying(6).
Traditionally, parents or pediatricians make all treatment decisions on
their behalf. Whenever the clinical status allows, the child should be
involved in this decision-making process. Prepubertal children may
require a proxy decider (usually a parent) to enhance their decision.
Adolescents with the decision-making capacity should be given
information regarding their illness and available treatment options to
arrive at a decision(7).

Validating children’s emotions

As the cognitive and emotional development of
children influences their under-standing of death and fears about dying,
they need developmentally appropriate psycho-logical techniques as
presented in Table III.

Reassurance from staff
& parents: that they are loved, have done nothing wrong, are
not responsible in any way for their illness, they will not
be abandoned

6-11 yrs

Concrete operational
stage.

Active fantasy lives,
personify death e.g., as a skeleton, imagine themselves
changing into the personification of death e.g., turning
into a skeleton

Address fears
associated their "fantasy approach" to death

12-15 yrs

Formal operational
stage

Death as a final
reality that happens to others but spares them. Death is
inevitable, death is final, they can be the victims, experience
entire range of emotions, may resist therapy due to concerns
specific to this age group, may become withdrawn or openly hostile

Validating reminiscences (like positive
self-appraisals, social connections, joyful events) and lamenting
reminiscences (like negative interpretations of past events, regrets,
difficulties) are helpful in bereavement work(8). These evocative
techniques are helped by bringing pictures, photo albums, videos and
scrap books to these sessions. Conversations with schoolmates, friends
and relatives may assist in the expression of a full range of emotions.
Pets allowed in the PICU for short visits can ease the child’s fears and
loneliness(9).

The family of the dying child

Families of dying children are vulnerable and will
require help during the acute stages of grief and bereavement support
long after the child has died.

Enhancing communication

Communication is vital while working with dying
children and their families. Family members who had been accurately
informed about expected events around the end of life were often found
to experience less anxiety and expend less effort in trying to cope with
their loss(10). Frequent, accurate and truthful discussions with parents
alleviates the sense of uncertainty and fosters confidence in the team’s
capability(11). Table IV suggests a few strategies to enhance
communication between the treating team and the family.

Table IV

Strategies to Enhance Communication.

1. Introduce team members to
the family

2. Suggest an appropriate
frequency of meetings while allowing for contingency measures in
an
emergency

3. Communicate a willingness
to see them through the entire crisis

4. Indicate members directly
involved in the care of their child and and how they may be
contacted

5. Avoid scientific jargon
and use simple language even with educated individuals

6. Anticipate and encourage
questions

7. Frequently stop to check
whether the family has kept pace with the rate of delivery of
information

8. Explain each
procedure/therapy in detail-expectations, possible side effects
and other
consequences

9. Encourage suggestions
from parents e.g., their perception of what the child
requires and
discuss the appropriateness of each

10. Break bad news tactfully

If termination of life support is being planned,
prepare the family for the event. More than one formal meeting is
required to reach consensus with families about foregoing life support
treatment. Families may need to know the approximate length of time the
child may survive after life support termination, so that unrealistic
expectations may be avoided. In cases where death is anticipated in the
ward after withdrawal of the life support, the bereavement support
during the transition from PICU to the ward should be planned with the
ward team that will receive the child. The grieving family should always
be informed in advance of any such transition arrangements(12).

Open visitation

Children represent the dreams and hopes of their
parents. Allowing time for goodbyes, visits and rituals permits the
opportunity to form some cherished memories(9). Open visitations make
the team’s job easier, decrease parental anxiety, and increase the
child’s cooperativeness with procedures(13).

Presence of the family while withdrawing life support systems

Frequently families want to be present with the child
at the time of death or wish to hold the child in their lap when life
support is being terminated. Ask parents if they have such desires.
Fears about heightened parental distress during such events are
exaggerated. On the contrary, a majority of family members regret not
having stayed with their child at the time of death(14).

Spiritual beliefs, rites and rituals

Spiritual beliefs strongly influence the existential
issues of life, death and suffering. Parents with strong spiritual
beliefs seem to resolve their grief more rapidly and completely after
the death of a child(15). Family members find great comfort when they
are given an opportunity to perform religious rituals in the PICU(16)
and norms need to be established in each PICU that allows the conduct of
ceremonies by religious groups within limits decided by hospitals.

Waiting

Waiting for parents of children in PICU is
exhausting. The causes for stress and possible strategies to limit these
are listed in Table V. Although waiting is sometimes unavoidable
(like the time taken to perform tests) it can be reduced when possible
(like in pain alleviation and delay in conveying medical reports).

Table V

Causes of Stress Associated with Waiting and Strategies to Reduce
Them.

Causes of stress while waiting
outside PICU

Strategies to reduce waiting
related stress

1. Enforced inactivity

1. Frequent updates of the child’s
status

2. Inability to leave for fear of
missing an important event or report

2. Assisting parents to find a
support person (hospital volunteer) to share the waiting with

3. Waiting with uncertainty
regarding the outcome

3. Providing a comfortable setting
in which to wait

4. Naturally occurring emotions of
fear, neglect, anger, loss and fatigue that occur in such
circumstances

5. Acknowledging the difficulty of
waiting during verbal communications with the parents

6. A arriving at a treatment area
long before the procedure begins.

Right to privacy

For confidential discussions and personal grieving
the family needs privacy when the child is dying. In such situations,
the family may be left alone to say goodbye to the child. The child’s
comfort can be monitored by regular visits by staff to the room while
still allowing privacy.

Appropriate place of death

If there is a clearly stated wish for spending the
last days of life at home, in a "butterfly room" in PICU or a place
where the family feels more comfortable instead of in hospital, the
family may be encouraged to do so(17). Removal of the life support
measures at familiar environment can be offered, if desired, with the
medical team in close attendance to ensure the child’s physical comfort.
It is documented that children die a less stressful death at home than
at the hospital. The control and independence the parents have at home
facilitates a less traumatic grieving process(18).

Address parental emotions

Parental emotions correspond to their stage of
grief–denial, anger, bargaining, depression and reorganization. Parents
when unable to cope with their own emotions may suddenly behave in
erratic ways that can easily alienate PICU team members. Bereavement is
a time for restoring strained relationships that may otherwise interfere
with normal grief resolution(19). If insightful support from the team
fails, bereavement counselors may be summoned. Fewer families who
receive such timely care need formal counseling at a later date(20). The
possible signs that might indicate difficulties in grieving among family
members are noted in Table VI.

Table VI

Indicators of Families with Grieving Difficulties and
Strategies in Bereavement Support

Signal indicators of
difficulty

Strategies in
bereavement support

• Persistent denial of
sickness or acknowledgement of severity of illness in the child

• Closure issues: discussing
postmortem reports to a certain cause of death

• Anger against the treating team

• A final visit to the ward where
child died

• Resistance in compliance with
various aspects of therapy.

• Hosting memorial services for the
bereaved families

• Emotional, occasionally physical,
withdrawal from the child.

• Support issues: staying in touch
via letters or phone calls

• Sudden and disproportionate
increase in religious fervor

• Access to support groups

• Insistence on seemingly futile
therapeutic ventures.

• Referral to professional help in
case of pathological grief

• Techniques to support siblings

• Recommending specific books or
websites the family can access

• Future issues: family may want to
know if surviving/future children are at risk & precautions to be
taken

Needs of other children and families in PICU

Superficial similarities between fatalities and
critically ill children may engender a sense of panic amongst children
or their families. Where possible, within the limits of ethically and
legally valid confidentiality considerations, such doubts may be
dispelled through empathetic clarification. Parents may be encouraged to
form support groups to assist their difficult passage through these
trying times.

Most conflicts arise as a result of differing
opinions between the family and the treating team regarding the child’s
status or expectations from treatment. Facilitating communication
between staff and family members to achieve congruence between the two
parties’ aims of treatment avoids such conflicts. Identifying capable
family members, who can be provided with practical training facilitates
a shared responsibility between the staff and family reducing conflicts.

Bereavement support for staff

Debriefing sessions have been used effectively
following a particularly harrowing experience to give all staff a chance
to ventilate their emotions and reduce grief. A bereavement counselor
can adequately assist in the grieving by PICU staff(21).

Improved work pattern, training and family

The work environment has a significant effect on
stress levels and various remedies for coping with such stress is
presented in Table VII. Team members living with partners or
children are relatively protected from bereavement related stress(22).

Table VII
Suggestions to Alleviate Work Pressures and Burn-out Among PICU Staff.

During the follow-up period parents have to tackle a
bewildering range of emotions. The critical care team, which was an
important ally during the last moments of their child, often withdraws
contact following the death of the child. The aim of follow-up care is
to address this void by effecting closure for parents who are coping
healthily with their grief and identifying those with pathological grief
requiring support (Table VI).

Most parents are able to cope with and resolve
emotional issues associated with bereavement probably because social
support from their families is still adequate in India. Also specific to
India are culturally sanctioned rituals like wailing and ceremonies
around death that help resolution of grief.

The family should be made aware that the end of grief
is not severing the bond with the dead child but integrating the child
into the family in a different way, than when the child was alive, as a
socially shared reality(23).

Conclusion

In conclusion appropriate preparation for death,
effective communication, allowing the family increased time with the
dying child, privacy, control of acute grief symptoms, an opportunity to
go over one’s life, a chance to solve unfinished matters, avoiding
protracted death, strengthening family ties, addressing parental
emotions, tending the needs of other patients and families in the PICU
while attending to the well being of the team members as well as
follow-up care forms the basic framework for bereavement support in PICU.

Contributors: RPS was involved in conception,
design, draft and revision of the article. AJ helped in drafting and
revising the article.

Funding: None.

Competing interests: None stated.

Key Messages

• Bereavement in PICU is a pediatric critical care issue.

• Dying or death of a child in PICU is a source of stress to
the child, the family, other children and families in the
intensive unit as well as to the team.

• Addressing the physical, cognitive,
emotional, spiritual needs of the dying child and the family,
reducing misinterpretations by others in the PICU, avoiding
conflicts between the team and family, bereavement support for
staff with improved work pattern and an appropriate follow-up
care forms the basis for bereavement management in PICU.